Tuberculosis, or TB, is treatable, yet, an estimated 1,200 Indians die of it every day. Ever wondered why? Because TB is often misdiagnosed leading to delays in treatment. The first and most important step in treating TB is timely and correct diagnosis, which is where Indian TB care fails.

Why? The lack of provider awareness and accurate tests, inaccessibility of reliable tests, shortage of affordable tests, and absence of patient support are some common challenges in diagnosing TB in India that pre-date the pandemic. With Covid-19, these have become more severe.

Symptoms of TB, such as cough or fever, are similar to symptoms of other respiratory infections such as the flu or Covid-19. Poor provider awareness and mixing up of symptoms means that TB is often misdiagnosed. Survivor narratives tell us that misdiagnosis is particularly common in the private sector. Patients are often chasing an accurate diagnosis while being treated for the wrong illness.

In the public sector, the tests used to diagnose TB are largely outdated and inaccurate. What does this mean for persons affected by TB? Inaccurate tests cannot detect TB, missing it entirely. So, the affected individual does not get a diagnosis in time, leading to more suffering.

Even today, when we speak of eliminating TB, reliable diagnostic centres with trained personnel are only available in a few select cities in the country, making access to TB care difficult. Naturally, these diagnostic centres are overburdened causing further delays.

In rural India, affected persons often have to travel kilometres away from home to access the right diagnosis.

Even if one gets to a centre, it may be too expensive. While the public sector provides free TB diagnosis in theory, there are hidden costs such as waiting times and travel costs. In the private sector, high-quality reliable diagnosis is expensive for most Indians.

A TB screening camp at Tawang in Arunachal Pradesh, in this photograph from February 15. Credit: TB Mukt Bharat-Arunachal Pradesh via Twitter

Emotional, mental toll

There is also the emotional and mental cost of diagnosis. A TB diagnosis can be traumatic and can jeopardise a person’s future, social standing, and career. Studies show that immediate reactions to a TB diagnosis are those of fear, depression, anxiety and even suicidal tendencies. Yet, TB-affected individuals in India receive no pre-test and post-test counselling that can help them manage their fears.

The Covid-19 pandemic has undoubtedly exacerbated challenges in diagnosing TB in India. Affected individuals had nowhere to turn to during the lockdown with TB diagnostic tools and health staff being diverted to Covid-19 management. Moreover, the significant drop in TB notifications – 41% – during the pandemic shows that we missed detecting and treating TB cases.

Clearly, both before and during the pandemic, TB diagnosis in India remains the weakest link in the chain of TB care, leaving affected individuals in the lurch.

So, how do we strengthen this weak link?

Overhaul diagnosis strategy

The government needs to invest in new diagnostic technologies and skilled manpower. Reliable diagnostics need to be free and accessible in every district, with drug susceptibility tests being made universally accessible. Expanding the public-private partnership mix, already in place in TB care, is one way to do this.

Community-based screening for TB in high-burden geographies is also critical. This would mean taking the tests to the communities on an ongoing basis rather than expecting them to spend money and time on travel to diagnostic centres.

Further, health providers need to be sensitised and trained to identify TB symptoms and follow the national guidelines on TB diagnosis. Pre-test and post-test counselling need to be mandatory in the public and private sector to address the mental health impact a TB diagnosis has on affected individuals.

Finally, TB diagnostic services need pandemic preparedness by leveraging technology to enable door-to-door testing. In the future, with the right kind of innovation, perhaps even at home self-tests, like Covid-19 diagnostic kits, are a possibility for TB.

Another way of leveraging technology is bi-directional screening modalities, given the resource limitations and commonality in symptoms in forms of TB and in Covid-19. Non-invasive measures, such as those based on acoustic epidemiology, allow screening for both TB and Covid-19 through the sound of a person’s cough. This is able to detect both latent and active TB infections, and Covid-19.

TB is treatable, but that advantage is lost if it is not diagnosed early and accurately. If India wishes to eliminate TB, its diagnosis strategy requires overhauling to make it more innovative, accurate, accessible, affordable, and person-centered. It also has to be robust to ensure it does not suffer due to future pandemics. There is no eliminating TB unless we diagnose it early and accurately.

Ashna Ashesh is a lawyer, a public health professional, and an MDR TB survivor. Bulbul Sharma is a content creator and brain TB survivor. Both are associated with Survivors Against TB, a collective of survivors, advocates and experts working on TB and related comorbidities.

World Tuberculosis Day is observed on March 24.